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Is This Normal Proceedure?

jcgirl

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jcgirl Apprentice
jcgirl
Posted

I spoke to my GI doctor's office this morning to ask for the blood test results so that I could try to understand why he told me I don't have celiac but he put me on the gluten-free diet anyway. I have been gluten-free for about 7 weeks with very positive results. Anyway, his nurse told me that the EMA was negative so they did not perform the anti-gliadin tests. Isn't that test the one that could show if you have an intolerance to gluten and/or wheat. I have been reading alot on this site and am still confussed with the tests. My son had all the blood tests done which came back normal and I have him on the diet with positive results as well. I believe however, if I understand correctly that his IgA was on the high normal side. If I ask for the IgA, anti-gliadin and IgG test will I have to go back to eating gluten. I had gluten by mistake and boy did I feel horrible for a couple days. Your advise, as always is greatly appreciated.

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gf4life Enthusiast
gf4life
Posted

They should have done the EMA, the anti-gliadin IgA & IgG, and also if possible the TTG! Some labs do either the EMA or the TTG, but it should still include the anit-giladin antibody counts! Yes you will have to go back on gluten to redo the blood tests, and they could still end up being negative. I went back and forth on the gluten-free diet for almost two years waiting for the right tests to be done, and I am convinced that it messes up the results. Your intestines heal and then you have to basically damage them again to a severe enough degree that the antibodies can leak out into your blood. Not only can this take a long time, but it can cause serious health problems that might not go away. Have you considered getting the gene test done instead?? You don't have to go back on gluten for that.

God bless,

Mariann

jcgirl Apprentice
jcgirl
Posted
  • Author

Mariann, What is the gene test called. I am going to the Dr. next week to talk to him about all the things I have learned via researching online. I do not want to go back on gluten for the test because 10 years of misery is enough for me. If the EMA is negative can we still be gluten intolerant?

KaitiUSA Enthusiast
KaitiUSA
Posted

You can be gluten intolerant but not celiac. EMA is a test for celiac. All you have to ask for is a celiac gene test. I would consider getting an Enterolab done...they do not require you to get back on gluten for testing.

gf4life Enthusiast
gf4life
Posted

You can get the gene test done a few different places. The most respected in the medical field(at least ont he West Coast) is Prometheus Labs. Your doctor can order the tests for you, but check to make sure your insurance will pay for it. Mine wouldn't and it costs $750. The do the blood tests (complete panel) and if that is negative they automatically run the gene test. I believe you can now order the kit and take it to your doctors office to make it easier for the doctor to order the tests for you. You can find more infor here: Open Original Shared Link

The cheapest and easiest is Enterolab. You can order it yourself at Open Original Shared Link and it costs about $150. It is not always reimbursed by the insurance, but some people have gotten the reimbursement. It is a cheek swab test that you do at home and send in. The gene test is actually done at a genetics lab in Denver called the Labs at Bonfill (or something like that). The nice part about Enterolabs test is that they will also include the lesser genes that cause gluten sensitivity as well as the Celiac genes. In my family two of my kids don't have the celiac disease genes, but they do have these other genes and are gluten intolerant. My daughter and I have celiac disease genes, my husband hasn't been tested yet.

Kimball Labs also offers a cheek swab test. I don't know how much it costs, or if you need a doctors order for it. Open Original Shared Link

You do not have to go back on gluten for them to do a gene test. At least if you know you have the genes, and symptoms that improve on the diet, then you are more likely to be able to come to terms with your diagnosis, especially when the doctor says you are negative for the disease, but you still need the diet!!

God bless,

Mariann

jcgirl Apprentice
jcgirl
Posted
  • Author

Thank you for the links. I am going to try the insurance reimbursment for enterolab. I didn't even think about the possibility before.

Laurie

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    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

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    • rei.b
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      By rei.b · Posted

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